Wednesday, June 27, 2012

Health Reform: The Most Important Civil Rights Victory EVER for the Chronically Ill

Advocacy for Patients with Chronic Illness always was conceived of as a civil rights organization. Because people with invisible disabilities face unique challenges that are not fully addressed by the disability rights community -- employers, schools, friends, family questioning whether we're really all that sick if we look okay; the crippling effects of chronic illness fatigue; pain, pain, and more pain. Because under the Americans with Disabilities Act, if you can't perform the essential functions of your job -- which means if you can't make it to work reliably every day, which is our biggest problem -- you can be fired, even if the reasons you can't perform those essential functions meets the law's definition of "disability."

Because people with pre-existing conditions cannot get health insurance.

The Affordable Care Act changed that. As such, it is the most important civil rights victory EVER to accrue to people with chronic illnesses. On January 1, 2014, all of us, for the first time, will be able to buy insurance. And we can't be charged more because we're sick. Period. For insurance purposes, our chronic illnesses will become irrelevant.

That makes tomorrow's Supreme Court decision either our Brown v. Board of Education, our Roe v. Wade -- the decision that ensures that we have the same rights as every other American to buy health insurance that guarantees our access to health care -- or our Dredd Scott -- the decision that consigns us to second-class status for generations to come.

So when you come to this blog or email me or call me to talk about the Court's decision, don't expect unbiased objectivity. Losing coverage of pre-existing conditions is, for me, being told I am not worthy, I am not equal, I never will be. It would be disrespectful, an indignity, an insult of the highest proportions. I will be crushed.

But if the Court preserves coverage of pre-existing conditions, I will be joyous! My equality will have been affirmed by the Supreme Court of the United States. The likelihood of anybody -- Democrat or Republican -- taking away coverage of pre-existing conditions after tomorrow will be slim, and would be met with a huge outcry by the American people, half of whom have at least one pre-existing condition. It would not be politically feasible. If we win tomorrow, we are there.

This is what is at stake in tomorrow's decision. Frankly, I couldn't care less that, in order to achieve equality, some people who don't want insurance will have to buy it. They would be exempt from the mandate if they couldn't afford insurance, and there would be subsidies to help them pay for insurance. It's not a huge burden, especially since most of them, at some point, will actually use that insurance for medical care. The harm to me, to all of us with chronic illnesses, of depriving us of equal access to health insurance and, thus, health care is far greater than the burden the mandate would create.

And so I end this day-before-the-day when I find out whether my rights count in this country with the trepidation that comes from being so close to equality that I can taste it, but knowing that, in 15 hours, it can be stripped away.

This decision is about way more than law, about way more than how we interpret the Constitution. It is about whether I am as much of a person as you are. I'm not sure how I can accept any answer other than YES. Jennifer

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